Jackie's MND journey: the story of an enduring smile

Jackie is a dear friend of mine, and as part of MND Week I wanted to share her courageous story. When I see Jackie and her sister for coffee, I’m always met with two matching, vibrant smiles ... despite the unimageable journey.

Life before MND
Life feels perfect. You’ve just married your high‑school love, Shane. You’re building your dream home. You’re 24, fit, happy, and running around a touch‑football field with an easy grin. Your biggest worry is the unflattering red top you have to wear.

It’s a beautiful evening at Bellerive Beach. A light breeze sweeps in from the Southern Ocean. You warm up, tossing the ball to Shane, who flicks it to your twin sister, Anna. You drop it. No big deal. It’s just mixed social fun.

You drop it again. One of the boys on the sideline teases you in typical Aussie fashion. If this is the worst life throws your way, you’ll laugh it off and leave the muddy boys behind at the end of the game.

But as the season wears on, you start to wonder. You’re fumbling easy catches. You’re losing balance when gently tagged. Games feel exhausting. You blame fitness. Your forearms ache. You water‑ski, play netball, dance — anything could have strained them. You push on. There’s a house to finish, dinner to cook, and a bike waiting for your early‑morning ride into the city.

Months pass. You’re back on the field in that same red top. But something is different. You can’t trim your fingernails for the game. The strength just isn’t there. Immediately, Anna is by your side, quietly taking the clippers into her own hands.
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It might have been then. It might have been a gradual feeling of dread. But in that moment the two of you shared a worry thought ... something is wrong. Something is very, very wrong.

Life Takes an Unexpected Turn
Even though Jackie could still pull herself out of the water while skiing in New Norfolk, it was time for answers. Subtle symptoms had become harder to ignore. Test after test brought no clarity. For nearly eight months, doctors searched for reasons behind her forearm pain and weakening grip. One neurosurgeon said, “I don’t think you have MND, but I wouldn’t bet my house on it.”

In February 2006, at just 25, Jackie was diagnosed with Motor Neurone Disease. MND causes the nerve cells that control movement, speech, breathing and swallowing to fail. Muscles weaken and waste. Every person’s progression is different, but the average survival time is three to five years.

Jackie defied the odds. Today she continues to fight MND with extraordinary courage. Her fitness helped, but her strength of spirit is what carries her forward. Shane left his job as an IT consultant to become her full‑time carer. Watching your young wife deteriorate is an unspeakable reality, yet Shane remains fiercely loyal, supportive and remarkably cheerful.

Anna’s life changed too. She lives nearby, works fewer hours, and is always ready. If Jackie needs anything, Anna is there. If Jackie wants to meet friends, Anna is beside her. If Jackie needs a straw held to her lips, it’s Anna’s hand that lifts the cup. Their unwavering support is visible in the twinkle in Jackie’s eye.

A question of perspective
Today, Jackie can no longer walk, eat or shower without assistance. As she sits in her wheelchair at the table, words are difficult to get out during the interview and to pick up Anna’s playful young toddler is something Jackie cannot do. The question had to be asked ... how MND had changed her life.

The open-ended question could have returned a lifetime’s worth of self-pity and despair, rolled into one long sentence beginning with ‘why me?’ But it didn’t have half the chance. Jackie answered simply and succinctly without the slightest hint of a downside. No uttering of being unable to walk. Or hug.

“I get to spend more time with my family and friends,” came the beautiful response. It was an effortless reply from Jackie, not in the physical sense of delivering the words, but in her outlook. Jackie immediately found the good. It’s her nature.

It’s the type of response that has the power to stop you in your tracks, right as you’re busily moving through a hectic day. There was no pause, no slumped shoulders from the wheelchair, just a sweet smile and a few gentle words.

​Living fully, still
Since her diagnosis, Jackie has embraced life as fully as she did before. Two months later, she and Shane surprised his parents on a Pacific cruise aboard the Diamond Princess. Her smile in the photos is the same as always.

In 2007, they flew every month except one ... Western Australia, Townsville, South Australia. Soon family including Anna, Heath, Nadine and both sets of parents were joining them on their adventures.

After returning from an eight‑month caravan trip around Australia, Jackie and Shane settled back home. The girl who “still feels bad for parking in the disabled space” continues to inspire everyone around her.

MND has taken much, but two things remain untouched: her belief in living life to the full, and that twinkling smile. Both come from a place deep inside and will always shine far more brightly than the challenges Jackie bears.

A day in the life: caring for Jackie
No one close to Jackie anticipated that a carer’s role would become part of life as they knew it. But in the case of Jackie’s loved ones, it’s as if they wrote the guidebook and had spent a lifetime in preparation.

Shane's day
Shane’s typical day begins between 7-8am after usually a restless night’s sleep as Jackie needs to be moved and rubbed during the night. Jackie has her tablets at 8am and gets up between 9:30-11:30am (sometimes later) which gives Shane a little time to tinker in the shed, work on the computer or relax. During this time Shane is still on call, ready to roll Jackie every hour or so and give her sips of water.
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When it’s time to get up Shane helps Jackie to the bathroom then out to the table for breakfast. As it takes time for Jackie to eat, breakfast usually takes 30 minutes before they hit the shower, get dressed, brush hair and are ready for the day ahead. With a bit of time before lunch, often Jackie will sit in her recliner, play with Taylah the dog or the two will head out in the car.

Most days Jackie has an afternoon lay down to rest her weary muscles. That normally happens from about 3 to 5 during which time Jackie tries to drink lots of water. Shane cooks dinner while Jackie is in bed and she gets up for a few hours until about 7 or 8pm when she calls it a night. Any break from routine, like going out for dinner, can leave her exhausted the next day.

Shane says, “I’ve heard other carers say ‘I feel like I’m the one with MND’ and I think that rings true with me too. Because Jackie and I are so closely tied, what one suffers so does the other. We were a young working couple with great jobs, loads of optimism and big plans for our future together. To let go of all our hopes and dreams and live for today is a big change. I think it's great that I'm able to be here for Jackie.”

With family and friend support, they’ve been able to stay in their home and access everything they need including medical equipment, a hydrotherapy spa, a wheelchair van, a caravan and holidays around Australia. For Shane he says, “I guess I'm living a dream life, except that it has a great big dark cloud called MND hanging overhead.”

“Jackie's attitude is amazingly positive, she is genuinely hopeful. The doctors have told Jackie something cold, hard and brutal but Jackie still thinks to herself, ‘I can beat this.’ Jackie often sheds a tear for others, ie watching a touching true story on TV, but it's very rare that Jackie will shed a tear for herself,” explains Shane.

Shane can see how someone suffering from a life threatening illness could slide into depression but he could never imagine Jackie going down that road. There is just too much hope, love and happiness inside her. In Shane’s words, “Jackie raises us all up and if she only got back half the love she gives she would still have enough for two lifetimes.”

There have been several changes in Shane’s life - some good and some difficult. After Jackie was diagnosed with MND he felt devastated. Yet, at the same time he tried incredibly hard to be strong for Jackie and blocked many of the feelings out (and thinks he still does to this day).

“I worry about Jackie a great deal, I often feel frustrated and anxious. I'm tired and run-down almost all the time,” says Shane. “On the positive side I now understand what's really important. I treasure life, family moments and fun times with friends. Jackie's love soothes all my aches and pains. She makes me feel warm and happy. She's truly amazing.”

“I really miss the good old days and it saddens me to look at what we've lost. At the same time I feel grateful for every day I get to spend with Jackie and I'm hopeful that we can continue to be happy together for many years to come.”

Anna's day

For Anna and Jackie, sisterly catch‑ups look different now, but joy still threads through everything. Jackie enjoys a Jacuzzi on warm days, a wander in the garden, or shopping if she feels up to it.

“We go to massage, appointments or anywhere else she may need to go, including catching up with friends,” explains Anna. “Just recently we caught up with our work mates for High Tea at the Grand Chancellor. We enjoy planning holidays, and also Ireland (Anna’s daughter) keeps us entertained.”

Anna, her husband Heath and daughter Ireland are always busy doing all sorts of things with Jackie. As a sister, Anna has Jackie and Shane on her mind daily and plans things around them if need be. There is never a time that Anna does not consider what she might be doing or what she might like to do.

“I will drop anything to assist Jackie and Shane, as they are our priority,” says Anna. “It certainly has been difficult to see Jackie like this, and I always hope there will be a cure just around the corner. Mainly it's about spending quality time with her and caring for her.”

After Jackie was diagnosed, Anna worked four days a week to ensure she could make the most of everyday with her. Anna would take her to appointments and give Shane a chance to rest for a day. Then Ireland came along, and the excitement was far reaching, something for all of them to enjoy. Anna then had 15 months off work on maternity leave, which gave her the opportunity to spend a lot of time with Jackie and she could watch Ireland grow up.

“Ireland loves to help Jackie, giving her drinks, food and even climbing up on her lap to give her cuddles,” comments Anna. “She is fully aware Jackie needs attention and assistance and is quick to assist her with all sorts of things ... even wiping her nose for her when Jack sneezes. Amazing what a two-year-old can intuitively know."

Anna sees her sister’s strength clearly. “Jackie’s attitude toward potential treatment options is positive. She is willing to try anything that may help.”
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“It is devastating and I wish that a cure could make her better, but we all remain strong for Jackie and Shane. I think her positive attitude in some ways makes it easier to deal with whilst seeing her fight MND. It certainly encourages you to make to most of EVERYDAY. We always did but even more so now.”